Should I get tested for Temporal Lobe Epilepsy?

Re: Should I get tested for Temporal Lobe Epilepsy?

Submitted by johnny on Mon, 2010-11-15 - 23:58

   I would strongly consider going through with it !!! I have epilepsy in both my right and left temporal lobes. You're getting a response from someone who has 420247 tatooed on my leg. It has helps control partial seizures that I have and keep my spirits up when i'm on the down side from my meds too. I divide it all weekly then daily and don't exceed my "weed" just like any med would be perscribed. I found a comfort zone with it and stuck with it. All of your symptoms sound simlar to some of mine.

   Your test , is it an eeg involving sphnoidal electrodes and others going near your jaw. Its worth it for them to locate the exact location of the seizures, then eletcrodes all throughout the surface around the sides of your brain ( temporal lobes ). It all narrows things down and will put your mind at ease knowing this and the doctors too. They'll figure out the seizure type better by locating and maybe a better med to take care of things or a simple surgery. I've had a surgery and I'm OK!!! Not to scare you !!! My Intensions are to be taken positively only please. Since my surgery my gran-mals have reduced enormously in the past 5 years. 

   Take Care , Johnny  

Re: Should I get tested for Temporal Lobe Epilepsy?

Submitted by 3Hours2Live on Tue, 2010-11-16 - 06:44

Hi ht93, I've had Temporal Lobe Epilepsy (TLE) all my life. The personality attributes associated with TLE, that is often called the Geschwind Syndrome, is very strong, and often skews the results of my standardized psychological tests (esp. the lengthy and otherwise objective ones, such as the MMPI). My Social Psychology Professor later told me that I probably had TLE, after I had a stronger than average complex partial seizure in his classroom, with many students assuming I was having a heart attack. I seem to be allergic or intolerant to the odor of marijuana, and I've never tried using it, but it sounds like many AEDs, different effectiveness for different people, with some benefits and various drawbacks. In seeking employment matching my university education, I became concerned that I was receiving diametric results between the written format and the oral format with evaluations for potential jobs. With court discovery, it was evident that the written format put me in the top 3% ranking, while the oral format put me in the bottom 3% ranking. I tried to improve my oral skills to match what's evaluated in oral interviews, and with many of my psychometric testing professors' advice, I researched TLE and its effects of the MMPI. I soon discovered the profiles that match what was then beginning to be called the Geschwind Syndrome, and the frequent observation by neurological researchers that the syndrome was typically irreversible once developed with TLE that spans across adolescence. The notions of "kindling" and "forced normalization" were interesting, with kindling a possible explanation of why my seizures were slowly getting worse and involving a wider and wider range of neurological phenomena. Researching Anti-Epileptic Drugs (AEDs) raised the issue that AEDs frequently do more harm than good with otherwise minor partial seizures, or seizures that can be easily tolerated and/or ignored. The dangers of possible kindling was often disputed in the neurological journals and books, with the paradox of the simultaneous claims of "it's important to stop even small seizures" versus "small seizures don't result in the hypothecated kindling". The effects of TLE on personality and "me" was already me, so the need of possible prevention of that problem was already precluded. Painless and painful migraines also became a problem in the last semesters of university. Trying to get EEOC acceptable documention of neurological impairments became an argument of extremes, either I was held totally disabled or not disabled at all. I discovered that any notice of epilepsy to employers immediately terminated all opportunity 50% of the time, and any later discovery of epilepsy, or when I couldn't hide the effects, terminated all remaining opportunities. My State Rehabilitation Counselor soon told me that I better choose an impairment other than epilepsy, or I would be kicked out of the program for having too hopelessly complicated of an impairment (the state later ruled my impairments were too severe), while the federal government ruled my impairments lacked any proof of sufficient severity to be covered by the Rehabilitation Act with discrimination by Federal employers. Catch-22 and Medicaid AEDs didn't help over about a two year period (the 1989 Loma Prieta earthquake brought my AED treatment to an abrupt end with Medicaid technicalities), and ending AEDs made the direct side-effects let up (liver and kidney damage), but stopping them seemed to speed-up the kindling even faster than before taking the AEDs, and secondarily generalized tonic-clonics (TCs) rapidly became very common and of much greater strength (with people calling 911 and many trips to ERs). TCs started to become near deadly in my mid- to late-40's, and by age 53, strong enough for major injuries that gave me my moniker of 3Hours2Live before ER provided emergency neurosurgery. Even without epilepsy, some reports cite that substances that have anti-seizure properties can aggravate seizures when discontinued. While the first AEDs I tried didn't help, stopping them seemed to make my seizures even worse than they were prior to the AEDs. The prejudice against epilepsy is horrendous. Often, when AEDs don't work at all or don't work completely, seizures are then blamed on psychological disorders with very sticky labels that are impossible to discard and that result in more discrimination. There are many impairments that imitate epilepsy (from syncope to hypoglycemia, etc.), but the length of the seizure that may be confounded with psychological problems and/or migraines is the rule-of-thumb of less than 5 minutes, suspect epilepsy, more than 5 minutes, suspect something else. With minor seizures (that frequently give no EEG trace), the parts before and after the seizure are next to impossible to distinguish from the actual seizure, and this frustrates that rule-of-thumb. It is often difficult to differentiate painless migraines from seizures, and many AEDs help with migraines, while many migraine medicines aggravate seizures and epilepsy. In hindsight, I wish I had had the leverage with doctors just to blame everything on migraines at the start, try various AEDs for seizure control under the pretext of treatment for migraines, and avoid being labeled with epilepsy for as long as possible to side-step the intense prejudice and immediate discrimination against epilepsy and the widely assumed co-morbid psychiatric conditions with epilepsy. Now, non-standard use of Keppra precludes my TCs, but my partials are uncontrolled, now with mainly ecstatic seizures of divine bliss and migraines and lasting minor to moderate brain damage from the TC injuries of a frontal subdural hematoma. Tadzio

Re: Seizures and diagnosed w/ Complex-Partial when 17 in '74.

Submitted by tbaldwin on Tue, 2010-11-16 - 16:14

I'd just started to smoke pot (marijuana) and drink beer at that age to fit in thinking I was cool. My first seizure was while sleeping in bed. My mother told me had a seizure and ambulance was called, I felt like there was nothing wrong with me. And wanted to run down the steps; if I'd really had one, I'd fall down steps. I had no ideal of what a seizures is. I'd like to know how many others start seizures at that age. But mine still haven't been controlled, they may've gotten more as I'd been on medicine after medicine (drug abuse), and an unsuccessful left temporal lobectomy in '96.